Another Month!

Where does the time go? I really am trying to keep the blog updated, but my days seem to fly by and then I crash into bed exhausted at night!

Things have been going really well. We have been so busy, but for the most part it is GOOD busy!

Okay let me back track...
At the end of January we had the the pinewood derby with cub scouts. Alex originally did not want to participate, but with 4 days left he decided he really wanted to do it. So Bruce and Alex hurried to get a car ready. Not only did Bug win Best in show for the webelos (his rank), but he had his fastest car yet. His entire den did great and his best friend, Walker won the overall speed Champion! ore then anything Alex was happy to have a day to spend playing with his friends.

I know I say this often, but we are so blessed to be part of this incredible group of boys and their parents. hey are such a nice group of boys. hey are kind, respectful and really enjoy each other.

The first week of February, Gramma and Grampa (Bruce's parents) came to visit. We had a really fun time. We went to the aquarium, Legoland, shopping and had lots of good times playing at home. It was so nice for them to get to meet Maddy and have some time with Buggy. Pics to come!!!

Since September we have been part of a homeschool co-op that meets the first, third and fifth Friday of every month. because  was on bedrest for most of the fall, I really didn't get to meet anyone. This semester we have become friendly with several families and it has been so awesome to have some new friends. We went on a field trip to the Perot Science museum, have had multiple playdates joined a science experiment class and been to the park. It is so nice for me to have some girls who can share the joys and struggles of homeschooling and Alex is thrilled to have made some really good friends. Now if we can just figure out how to fit everything in our days! Speaking of co-op, I have also been approached by several of Alex's teachers telling me how much they enjoy having him in class and what a leader he is. It makes me proud that he is able to go into a classroom and show his incredible spirit in a way that touches people.

A few weeks ago we were approached by child life at Cook Children's Hospital about having Alex's picture on a wall in the hospital. I agreed and Alex was thrilled! He was interviewed in late January and had his pictures taken this past week. I saw a few on the photographer's camera and they looked awesome.  can't wait to share them once we have them.

I have signed Maddy up for Kindermusik. It is a music class that is fun and helps foster development. Alex and I did it when he was a baby for several years. Maddy had her first class on Wednesday an LOVED it! his semester is called sign and sing. They are learning sign language. Ms. Kat has had babies as young as 5 months old start to sign back. Maddy is fascinated when  sign to her and just grins and grins. She is really starting to have such a cute personality. She is smiling all the time and has really found her voice. She is definitely a mama's girl. She is VERY attached to me. She loves her brother and looks for him as soon as she hears his voice. She loves to be in the playroom when he is playing so she can watch him.

On Friday, Alex once again belt tested in taekwondo. He continues to thrive I his classes and absolutely loves it. They did not find out the results yet, but I have no doubt Alex passed as he did an incredible job!

I am so proud of my boy as I see him work so hard to overcome the effects of his mitochondrial disease and accomplish his goals.

Medically, everyone is holding their own. Alex has not gained any weight in a year and is struggling with fatigue again. He is back to taking a 4-5 hour nap almost every afternoon. We are tinkering with his TPN in hopes of getting him feeling better again. He is also being started on iron and is very close to needing a blood transfusion again.  Maddy is almost 4 months, weighs 11 lb 14 oz. She is doing pretty well. She is still struggling with reflux, but is doing well overall.

Thanks for checking in!
Ali

Medical Update

The last few weeks have been crazy with a ton of appointments. I need to catch up quickly before I forget everything! I am going to go by date to make it easier.

January 2nd- Alex had 2 appointments. The first was with endocrinology. We are kind of at a stand still with endocrinology. We would all love to be able to give Alex several hours a day unhooked from his feeds/ TPN. Unfortunately, his blood sugars don't hold and Alex feels really bad. We have decided to leave things alone for now and possibly challenge him inpatient in the spring. He also saw pain team. He is working with them on guided imagery to try and give him a way to handle pain without medication.

On January 10th Maddy had her first fever. Because of her age we had to go see Dr. Benzick. He examined her. She would up having a UTI. We started her on antibiotics. Poor girl she was pretty miserable for a few days while the medicine kicked in.

On Sunday, Alex, Maddy and I traveled to Houston for appointments on Monday. Alex and I were both scheduled to see cardiology. Alex's heart rate is too high all the time at this point. It also jumps up quite a bit when he is sitting or standing. We are starting him on a beta blocker to try and bring his heart rate down some. I was asked to see this doctor a year ago. The hole that Alex had in his heart that was closed in June of 2012 has a 90% chance of a family member having it. My Mom was tested and she has the same defect. I had an echo on Monday and I also have the defect. I will have further testing and a possible closure sometime in the spring.

Tuesday, January 14- Maddy had 2 ultrasounds. The first was an ultrasound of her kidneys. This was ordered because of her age and the fact that she has a UTI. They wanted to be sure her kidneys looked okay structurally. They checked out fine. We will hope that this was a fluke infection. If she develops another UTI they will do some more testing. The second ultrasound was because of her reflux. She continues to have pretty bad reflux. They wanted to look and be sure there is no anatomical reason for her to be refluxing. The ultrasound showed that anatomically everything is fine, but was read as "multiple episodes of significant reflux". We have started an additional medication to try and keep her more comfortable.

Wednesday, January 15- Alex saw hematology. We discussed Alex's MRI of his liver. The iron buildup in his liver cells is better. We are rechecking his iron labs, but most likely will be starting iron supplementation in the near future. Alex has been sitting just above his transfusion threshold for a few months now. We have seen an increase in fatigue. He is back to taking his 4-5 hour nap every day and is complaining of feeling exhausted. We have decided to give him a few more weeks to see if things improve for him. If he is still feeling so fatigued will give him a transfusion to see if we can make him feel better. We also checked his clotting because of some unusual bleeding we had this week. (He had blood dripping out of his jtube Stoma).

Thursday, January 16- Alex saw pulmonary. This is a "new" doctor for us at cooks. However, this is a doctor that we have known for years as he came from Houston! It is MUCH easier to see a "new" doctor when you don't have to give Alex's complete history and explain all of his "quirks"! His pulmonary Function Tests looked better then they have in years. We are so grateful for that. We have decided to leave everything as it is right now. If things decline again we will address them at that point.

Whew! That catches me up. I promise to do a fun post soon with our adventures and pictures.
Ali

Incredible News!

This is not something I have talked about openly. When I was 5 months pregnant with Maddy we found out that one of our genetic reports had not been synced correctly at the lab and Bruce's results were not correlated with mine and Alex's. They came back in July showing that Bruce and I both carry a genetic mutation that is known to cause mito. (It is not believed that this is the cause of Alex's mito because he only has one copy.) While initially our intention was to not do any testing on Maddy until at least 6 months, when this information came to light it was decided she needed to be tested at birth. I got the call earlier this week that Maddy did not get either copy of the mutation. We are so excited to cross this form of mito off the table as it could have been very serious. So we continue to enjoy every day with this precious girl and we will see what the future holds.